Devastated mother pays tribute to little girl who defied medics by living for nine months

Nancy Jo Anne Rogers was born with Smith-Lemli-Opitz Syndrome, a condition that affects multiple body systems including internal organs, growth and intellectual development

Lisa said Nancy developed her own little character and is always laughing
Lisa said Nancy developed her own little character and was always laughing despite her rare condition

A heartbroken mother pays tribute to her ‘perfect’ baby daughter, who defied medics by living nine months after being diagnosed with a rare genetic condition.

Nancy Jo Anne Rogers was born with Smith-Lemli-Opitz Syndrome – a condition that affects multiple body systems including the internal organs, growth and intellectual development, facial features, fingers and toes.

Constantly defying medical professionals’ expectations, Nancy lived months after her parents were told she “won’t be here in 48 hours.” Teesside Live Reports.

Her mother Lisa Rogers, from Thornaby, is telling her daughter’s story to raise awareness of the rare genetic condition.

“She had a perfect life. We were told that she would never smile or get a headrest, and that she would never sit alone — she could do all those things,” Lisa said.

Lisa has raised and donated money, along with blankets and clothes, for North Tees University Hospital’s special baby ward



“She kept laughing, she started waving and smiling. She developed her own little character.

“All the things we thought she would never do, she did. And more. For such a frail baby, she has accomplished more in her nine months than most of us do in a year.”

After a normal pregnancy, Lisa was concerned about her baby’s movements and made her way to North Tees University Hospital in September 2020 – where she was admitted days later. On Friday, September 25, the healthcare assistant welcomed her daughter into the world via caesarean section.

But it wasn’t until Nancy arrived that she and her team of midwives realized something was out of the ordinary. Nancy was taken straight to the special nursery that takes care of premature or critically ill newborns.

Nancy Rogers pictured as a newborn



Lisa, 40, said: “When she was born she didn’t cry. She was having trouble breathing – she was wheezing.

“The only thing I remember was her saying that she only had four fingers — she didn’t have her pinky on her left hand.”

Medical professionals determined that Nancy had problems with her heart and kidneys, slanted eyes, webbed toes, a missing finger, and was unable to suckle or swallow. The newborn was transferred from the University Hospital of North Tees to the Freeman Hospital pediatric intensive care unit.

Lisa continued: “Two days after giving birth via caesarean I traveled to Newcastle. It took me time to heal, but Nancy came first. I was allowed to wrap and hold her, but she was so bad. A doctor there asked me if I understood how bad she was.

“He told me to take her home to meet her family because she won’t be here in 48 hours. They had done everything they could and now we just had to wait and see.”

But three weeks later, on October 23, 2020, Nancy came home. The following month she was diagnosed with Smith-Lemli-Opitz Syndrome (SLOS). The symptoms of SLOS vary from person to person. Some people may have more symptoms than others, and symptoms can range from mild to severe.

Those with the syndrome also have abnormally low levels of cholesterol in their blood. Lisa only knows of two other people in the North East with the condition – one of whom has sadly passed away.

Despite having only 48 hours to live, Nancy defied doctors’ expectations and continued to grow and develop. Despite remaining in the care of several hospitals and specialists in the Northeast, Nancy lived a full life, Lisa said.

She enjoyed her first Christmas at home, taking three public holidays and laughing while spending time in the water. But on July 5, 2021, Nancy was taken by ambulance to North Tees University Hospital, where she received treatment after Lisa noticed she was having trouble breathing.

Unfortunately, two days later she died in the children’s ward of heart failure and sepsis.

Lisa continued, “I sat with her the whole time and one minute she was calm and not moving much, then a few hours later she was lively and kicking her legs and playing. I held her in my arms and when I thought she had fallen asleep I put her back on the bed and put her oxygen mask back on and she just rolled onto her side and was gone. She had died in my arms.

“Doctors and nurses worked on her for 57 minutes. But she was ready to go – she was tired and she’d had enough. We are now saying that she didn’t want me to have to make that decision to have her open heart surgery which only has a 10% survival rate.

“Nancy made her own decision.”

Since Nancy passed away last July, Lisa and her family have worked to raise awareness of SLOS and raise money for the organizations that have helped Nancy. She raised and donated money, along with blankets and clothing, to North Tees University Hospital’s special baby ward.

Lisa said: “Words cannot express how grateful I am to everyone at the North Tees Special Care Baby Unit – especially Zoe Kitching and Jayne Jobling.

“Jayne attended Nancy’s funeral and, like many other nurses, continues to be a huge support to me. Nancy simply would not have had her nine and a half months without the NHS.”

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